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2.5 crap months, and at least another 3 to come... don't you love medication brand switches for no reason 😬

My rheumatology department switched me from Imraldi to Yuflyma at the end of January. They're both adalimumab but as they're proteins the structure isn't exactly the same. Having said that they *should* work the same as the active site should be the same. Basically yuflyma is cheaper so it costs the NHS less. I was willing to give it a go as its the same medication, although I knew there was a risk it wouldn't work, and well it hasn't... rant incoming!

The last 2.5 months have been sh*t. I had a flare in January before I switched brands- I was getting about 2 flares a year and this one was expected. It was treated with oral steroids. Tbh this flare wasn't too bad as the Imraldi was still working in the background.

Then I switched to Yulfyma. 5 weeks after the last flare (and last Imraldi dose), bam another flare. Again treated with oral steroids which took a lot longer to work than usual, probably because the Imraldi was very low in my system by this point. Rheumatology agreed I might need to switch back, or it could just be an effect of switching brands, so we'll revisit it at 12 weeks of the new brand (it takes 12 weeks to build up in your system to get the full effects).

Well, now 5 weeks after the last flare I'm in another one 🤦‍♀️ I'll contact rheumatology on Monday, get more steroids and switch back to Imraldi. But that also means facing another 3 months of this flare cycle once I get Imraldi back and that could take a little while.

So I'm facing a minimum of 3 more sh*t months and I'm fed up already. There's also no guarantee Imraldi will still work 😫

That 3 months of known crap health overlaps with the spring qualification series for English and British trampoline gymnastics where I compete in the disability category. How utter *insert string of expletives here*. I've been working so hard for 6 months to prep and build up to the season and make improvements to my routines and now it feels like that's all gone out of the window. I had a crap season in 2019 before the pandemic put a halt on everything, and last year was my first season back that was also marred by an injury and then covid. Can I not just catch a break and have a good season for once? 😡

Oh and did I mention that I've got a 3hr drive tomorrow to work from a different office next week? Why do flares always happen at the worst possible time. 😮‍💨 Next week is going to be hell but at least I'm closer to my rheumatology department.

So yeah 2am, I'm utterly broken, fed up, anxious, low, and at my wits end. I don't know what I can do right now to feel better as I've already tried everything. Oh and did I mention I want sleep? Chronic pain sucks.

Somebody just please make AS piss off now and leave me alone for once 😢

#ChronicIllness #ChronicPain #axialSpondyloarthritis #AnkylosingSpondylitis #Arthritis

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Diagnosis

As some of you know, I have really been struggling with my hands lately. I have cerebral palsy and have had chronic hip pain for the last 7 years.

My rheumatologist thought I had fibromyalgia, but I don’t. My rheumatologist worries that I might develop scleroderma. My ANA is extremely high, but I do not have rheumatoid arthritis. I have progressively been losing function in my hands and my knuckles turn purple at times. (The high ANA and pain in my hands are not related to cerebral palsy.) My rheumatologist said this could be consistent with arthritis.

It hurts to write, type, and do many other things. The hip pain was bad, but my mentality has gotten worse as my hands have lost functionality.

Has anyone else experienced anything like this? At times I want a diagnosis so this pain could be treated.

#Undiagnosed #CerebralPalsy #ChronicPain #Arthritis

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Recent Little Joy

I just wanted to share on here a positive thing today. I'm 18 years old and a college student and walking all around my campus can be killer on my joints. I commute but the parking is always insanely full by the time I get on campus so I devised a solution. About a month ago I applied for and recieved a disability parking placard. This has done wonders for me. The spots are always open all over campus and I can park in between my classes rather than far away from one or the other. It feels weird to be a young person with an invisible disability climbing out of my car next to people who side by side look "more disabled" than me. Sometimes I feel like im taking a spot away from someone who actualy needs it. Ive been trying to remember that I AM someone who actually needs it. It's ok to need accomodations big or small. #LupusNephritis #Arthritis #ChronicIllness

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Dear Chronic illness warrior, it’s okay if…

•You can’t get out of bed today.
•Your needs change.
•You take longer than others.
•You cancel or change plans.
•You can’t hide your pain today.
•You use a mobility aid.
#ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Arthritis #Fibromyalgia #Sarcoidosis

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Hang in there

A lot of times we don’t see all the things we do everyday. We do things for others so much more than we do for ourselves. And sometimes those things that we do for our families are in turn helping us. Maybe we help out our parents so that we’re not worrying or stressing over the fact that they won’t or can’t do those things for themselves. A lot of times we have to choose between this or that so we can get through our day. And sometimes we just want to disappear from the world so that we can cope with our own troubles. I get it. Not everyone will understand what we are going through but we hang in there. Somehow we hang in there and get through our day. And even on the days we can’t seem to get out of bed. We breath…sometimes breathing is our accomplishment. So to everyone that read this far in my vent…hand in there! Breath! And one last thing….try to love yourself…with all your problems…all your pains and illnesses…all your craziness! #ChronicFatigue #ChronicIllness #Migraine #Fibromyalgia #SpinalStenosis #MentalHealth #IrritableBowelSyndromeIBS #Arthritis #Caregiving #ohsomuchmore

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What to do when family says you aren't facing reality

I am a dialysis patient with arthritis in my hands. I have a bad heart. I was told that I might have 3 years to live. I, finally, pulled out of the funk I was in when I read a piece on here about things that make housecleaning easier for someone with chronic illness. I ordered a Roomba and a stain cleaner. My brother says they are wasted money, that he ends up doing the maintenance, and that I am not facing reality about my situation. Yes, there's a lot I can no longer do. But with a few tools, there are things that I CAN do that will make me feel less useless. I think what my brother said was unnecessary and cruel. He thinks he is facing reality. He also thinks I should sell my house and go into a retirement residence. I don't!

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Not a good day #Grief #Anxiety #PsoriaticArthritis #ADHD #GeneralizedAnxietyDisorder

Today is not a great day…but it actually started last night. I read a post about an old photo of an AIDS patient dying, someone opened up about their brother dying the same way and being with him. I replied about being with my husband in a similar fashion but different circumstances. It got me crying and the person’s reply back to me made me cry more; he was so kind and understanding.
Then I realized that 5 March is my 19th wedding anniversary when I looked at my calendar, which made me cry. Woke up this morning to an arthritis flare…every joint hurts and my body just aches, I have no energy. My close friend, who I called up to cheer me up, understood because his late grandmother’s birthday is next week and he’s been down about it too. We decided we should do something together.
I felt so bad I even texted my son just to tell him I loved him because I felt the need to.
I know I will be okay and will come out of this but right now it doesn’t feel like it. He’s been gone almost 5 years and I still feel like a part of me is missing. I don’t think my heart will ever be whole again.

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